Chronic cerebrospinal venous insufficiency (CCSVI) continues to be described as a “controversial therapy” for multiple sclerosis in Canada. Canadians, meanwhile, have yet to be informed whether the first procedure for the promised clinical trials for CCSVI has even been performed.

Each new international study brings, in the meantime, fresh media claims that the treatment has been proven or disproven — ignoring the scientific method and the balance of evidence.

The most recent study to receive international attention, out of Buffalo, claimed the procedure failed to improve the health of MS patients. It has yet to receive peer review, did not include enough patients to produce statistically significant results and included adverse (related and unrelated) events — such as intercourse pain and a diagnosis of shingles — up to 24 months after the procedure.

Canadians living with MS are tired of the rollercoaster ride that comes with each new positive and negative study, and require real answers from their minister of health — and more importantly, progress and results from Canada’s own clinical trials.

Unfortunately, answers from the minister are not forthcoming, although she claims to be transparent with colleagues and Canadians. On Feb. 20 I received a carefully crafted letter from the minister supposedly answering questions which I began posing to her office the month before regarding the CCSVI trials and the MS registry.

Regarding the “MS Monitoring System”, the minister’s letter said: “The system was ready to receive data in September 2012.” Sadly, this was not an answer to my very specific questions: Has the MS registry begun? If so, on what date, and how many patients have been included. If not, why not?

Regarding the CCSVI trials, I asked if patient accrual had begun, and if so, on what date. I asked how many patients had been recruited and how many centres had passed ethical review boards.

While the minister’s letter claimed that trials began in November 2012, her former caucus liaison wrote to me on Jan. 29, 2013, to state that they started in January 2013.

Perhaps even more surprising was the fact that the minister was unable to provide information on the trial. Although I can accept that the principal investigator has overall responsibility for patient accrual and that the federal government wishes to remain at arm’s-length from this process, given the nature and size of the funding package for this study it’s hard to believe that reportable milestones have not been contractually established which would require regular updates. Canadians have a right to know who is ultimately responsible for oversight. Is it the minister? Someone else?

Other examples of politics overshadowing science abound. For example, after reading through five four-inch binders of material from two ATIPS, I learned of the “Report on Senate Caucus Meeting” regarding Bill S-204 on Multiple Sclerosis and CCSVI, held Feb. 7th, 2012, which included the minister of health, the parliamentary secretary and Canadian Institutes of Health Research President Dr. Alain Beaudet.

Many of the senators asked very good questions — behind closed doors. Senator Daniel Lang raised questions about trials and mentioned that this was an important issue in the Yukon, as it is across Canada. Senator Carolyn Stewart Olsen asked about the delay in setting up the clinical trial. Senator David Tkachuk raised the issue of access to treatment and whether provincial governments can allow the procedure to be carried out by doctors. Senator Doug Finley asked about access to treatment and why patients cannot choose, given that “it’s their body, their illness”.

Canadians with MS have been asking the same important questions since January 2010, and wish they had seen the same courage and questioning at the Senate hearings on Bill S-204, rather than the prepared questions that were read into the record to justify the government’s position. They also wish that Conservative senators had shown the same fortitude during the hearings on the bill, and heard from those living with MS, as they would have heard from those living with autism, cancer or dementia, or those living in poverty.

Through the two ATIPS, I also learned of an e-mail from Feb. 6th, 2012, that reads: “CIHR will take the lead on drafting a short 5 page for the minister. Deck will include: … one page on why the Government cannot support either S-204 or C-280.”

When did MPs and senators learn of their government’s position? Did they know the position going into the Senate hearings and, if so, why did no one have the courage to talk to Canadians living with MS and be honest with them? Why did no one trouble to explain to them that after the defeat of Bill C-280, Bill S-204 would go nowhere? Canadians with MS should not have been given false hope for eight months. Such treatment is unconscionable.

While politics continues to be played with the lives of Canadians with MS, the science continues unabated from around the world. Canadians with MS look forward to hearing the government discuss, for example, the findings from the 2013 annual meeting of the International Society for Neurovascular Disease — and not just negative studies that support its position — and to the results of the CCSVI clinical trials in Canada.

Kirsty Duncan is a Liberal member of parliament (Etobicoke North) and critic for the Environment. She has a Ph.D. in geography (University of Edinburgh, 1992) and has taught meteorology, climatology, and climate change at the University of Windsor, corporate social responsibility and medical geography at the University of Toronto and global environmental processes at Royal Roads University. She served on the Intergovernmental Panel on Climate Change, an organization that won the 2007 Nobel Prize with Al Gore and is the author of Hunting the 1918 Flu: One Scientist’s Search for a Killer Virus (University of Toronto Press, 2003), and Environment and Health: Protecting our Common Future (2008).

The views, opinions and positions expressed by all iPolitics columnists and contributors are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of iPolitics.

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Kirsty Duncan is a Liberal member of parliament (Etobicoke North, elected 2008 and 2011) and critic for the Environment. She has a Ph.D. in geography (University of Edinburgh, 1992) and has taught meteorology, climatology, and climate change at the University of Windsor, corporate social responsibility and medical geography at the University of Toronto and global environmental processes at Royal Roads University. She served on the Intergovernmental Panel on Climate Change, an organization that won the 2007 Nobel Prize with Al Gore and is the author of Hunting the 1918 Flu: One Scientist’s Search for a Killer Virus (University of Toronto Press, 2003), and Environment and Health: Protecting our Common Future (2008).